PB2681: GAPS IN THE ASSESSMENT AND MONITORING OF CARDIOVASCULAR RISK AND PSYCHOLOGICAL BURDEN IN POLYCYTHEMIA VERA: LANDMARK 2.0: A WORLDWIDE HEALTH SURVEY
Authors: Claire Harrison, David Ross, Laura Fogliatto, Lynda Foltz, Lambert Busque, Zhijian Xiao, Florian Heidel, Michael Koehler, Giuseppe A. Palumbo, Massimo Breccia, Norio Komatsu, Keita Kirito, Blanca Xicoy Cirici, Joaquín Martinez-Lopez, Alicia Rovó, Cheryl Petruk, Catalin Bobirca, Laura Mirams, Abigail Mcmillan, Gavin Harper, Jean-Jacques Kiladjian
Journal: HemaSphere (2023)

Topic: 35. Quality of life and palliative care Background: Polycythemia vera (PV) patients (pts) have a high risk of thrombosis and cardiovascular (CV) events are the main cause of death. PV Pts also report reduced quality of life (QoL) due to high symptom and psychological burden. Aims: This study examined patterns in CV risk assessment and PV-related psychological burden, comparing results from physician (phys) and pt perspectives. Methods: The LANDMARK 2.0 survey of PV pts and phys was conducted in 11 countries between April 2021–May 2022. Pts aged 18–89 years (yrs), and phys who were managing PV pts within the preceding 12 months (mo) were included. Pts were stratified by current therapy (tx) stage: first-line cytoreductive tx for ≤1yr (PV-C), second-line tx for ≤1yr (PV-I), or any line of tx for >1yr (PV-M). Results: Overall, 133 phys and 274 PV pts (PV-C =86; PV-I =26; PV-M =162) completed the survey. In the PV-C, PV-I, and PV-M groups, median age was 63, 59, and 64 yrs and time since PV diagnosis was 43, 117, and 312 weeks, respectively. Most common PV treatments were hydroxyurea and ruxolitinib. Phlebotomies were received by 53%, 31%, and 29% pts in PV-C, PV-I, and PV-M stages respectively. Basic CV assessment (e.g., BP and chol) was routinely performed by 77%, 62% and 53% of PV-C, PV-I and PV-M treating phys, respectively. Comprehensive CV assessment (e.g., ECG and/or ECO) was performed less frequently (PV-C=60%; PV-I=47%; PV-M=32%). Among phys who never performed basic (n=21) or comprehensive (n=40) CV assessment, reasons cited include lack of necessity (38% & 43%), insufficient time (38% & 15%) and insufficient resources (19% & 35%). 68% and 63% of all phys believe that basic or comprehensive CV assessment could not be used more effectively in pt management. In contrast, 55% of all pts reported receiving routine basic CV assessment. In particular, PV-C pts reported a lower rate than phys (63% vs 77%). Fewer PV-M pts received advice on reducing CV risk (45% in the last 12mo) vs PV-C and PV-I pts (73% & 69%, respectively, in the last 6mo). Fewer PV-M pts had comprehensive CV assessment compared to PV-C and PV-I pts (42% vs 76% or 59%, respectively). On a scale from 1 (no impact) to 5 (significant impact), when asked how PV affects QoL, most pts (58%) reported an impact of 3–5 on emotional well-being and mental health, especially PV-C (66%) and PV-I (80%) pts. 38% of all pts rated the impact of phlebotomy on QoL as 3–5, 41% of whom experienced stress about managing hematocrit. However, a minority of phys reported ever having assessed the emotional burden of phlebotomy (PV-C, 33%; PV-I, 28%; PV-M, 36%). Among respondents who had ever carried out/received a psychosocial burden assessment during routine visits, fewer pts than phys reporting the assessment being performed always/often (Figure 1). Regarding PV-related psychological burden support received, 52% of pts reported being somewhat/very satisfied. More pts vs phys reported a lack of communication on self-help strategies in PV-I (36% vs 12%) or on the rationale for having performed specific tests in PV-I (20% vs 8%) and PV-C (24% vs 9%).Summary/Conclusion: Control CV risk factors in PV pts is recommended, however, there is no standard method for monitoring CV risk, highlighting an unmet need. These findings indicate that CV-risk education and testing are not typically provided throughout the tx process, particularly for pts who are stabilized on long-term maintenance therapy. Additionally, our findings show pts and phys disagree about the perceived importance of PV-related QoL assessments. Pt care may be enhanced with regular assessments throughout tx and increased communication Keywords: Polycythemia vera, Thrombosis, Myeloproliferative disorder, Quality of life